Our ‘Topic of the Month’ in October will be, ‘Raynaud's Phenomenon'
Raynaud’s phenomenon is a condition in which the small blood vessels in the extremities (fingers, toes, nose, ears) are over-sensitive to changes in temperature. About 20-30% of lupus patients develop Raynaud’s phenomenon as a secondary condition.
We would really love to hear your tips and experiences about this condition. Do you have any clever ways of preventing Raynaud's attacks? Is there a product that you couldn't live without during the winter months?
Let us know all of your tips and experiences and we’ll compile them at the end of the month for an article. Please share in the comments section below, or email paul@lupusuk.org.uk
The article itself will be posted on the LUPUS UK Blog at lupusuk.org.uk/category/blog/
All submissions will be anonymised.
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Paul_Howard
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Though I haven't been actually diagnosed with raynauds, my hands & fingers feel the cold terribly. I carry my wool gloves with me everywhere winter and summer & even to Italy, Spain & Cyprus, they are always in my handbag.
I haven't been diagnosed with this either, but I seem to somehow manage to get darn-near frostbite on my feet standing on a very cold floor in winter (when most people don't notice it, soles of my feet go red, then white and numb. Yikes!). Doing any rummaging around in a freezer is a no-go as well. So, I wear socks all the time in the house (I'm knitting a new wool pair now), I have gloves which are fingerless, but also have a mitten option for folding over and I carry those everywhere. And, weird but true, I wear colour-changing nail varnish so I can keep a visual check on my temperature on the tips of my fingers and go run them under warm water when need be (they're currently deep pink, which means they're too cold for some reason, so about to do that now).
I source mine from Amazon.uk - it's UV-cured nail varnish (I have a lamp, and it doesn't make me react like the sun does, so it seems to be ok for me to use). The principle is it changes due to temperature; since my nails are in a state due to illness I don't mind covering them up, and it makes me feel like I've made an effort with my appearance even when I feel pretty crap that day.
Shopping in supermarkets, especially Sainsbury's. I find is the coldest place to shop. In the summer I have to wrap up & wear a coat every time I go in there, as well as affecting my hands & feet it affects my whole body making me so cold that I just want to go to sleep, I then need to wrap up in a blanket & go to sleep when I get home.
I have raynauds in my hands and feet all year round but much much worse in the winter, my fingers will go as soon as the temperature drops from hot/warm to a few degrees cooler whether that's just getting out of bed, moving from one room to another or going outside and just moving from warm sun to slightly cooler shade in the summer, quite often with my feet once they're warm they will go the opposite and start burning especially in the summer! When I have a hot flush my hands warm up pretty quick but the hot flush doesn't seem to quite reach my feet and there never seems to be a hot flush when you need one😳
If I don't warm them up quickly they become extremely painful and will go completely numb and when they do start to warm they turn blue with horrible pins and needles sensations then eventually they come back to the land of the living.
I always have a hot water bottle on the go and I even take it with me when I go out in the car during the winter whether I'm driving or not so that I can try and prevent them from 'going', I've also used the little disposable hand and feet heat pads for many years that I would buy by the boxfull from eBay but a couple of years ago I discovered the little rechargeable hand warmer called 'HotRox' from Amazon, it's perfect as you can turn it on and off , I also couldn't live without my sheepskin boots/slippers, as they are the only things that keep my feet warm throughout the cold months. Soft leather fleeclined gloves for driving and padded thermal mitts for anywhere else, I definitely couldn't live without any of these products and one of the most important things I have to make sure I do is to be warm before I leave the house.
I thought I was the only one who uses the hot pocket pads.I put them in my socks n gloves to try n keep some heat in and ease pain.my husband n sons think I'm crazy and can't possibly b so cold to need hot pads in my socks gloves.leather gloves with fluffy lining are great too.
thanks for making me feel slightly less crazy with my quest for heat !
Hi Mandagee, no you're not crazy or if you are then so am I !
I've had raynauds since 2001 it was one of my first symptoms of CTD, I have to have heat or I'm doomed but for three years now I've been having awful hot flushes, once upon a time there was no such thing as 'too hot' so now trying to stay warm without inducing a hot flush is a balancing act and almost impossible, I'm 56 next month and I thought the hot flushes would be over by now, I'm constantly going from freezing to boiling in a nano second, I think my body thermostat is properly broken!
So you're not alone I couldn't live without my heat pads either 👍🏻😃🌺
I forgot to say that I can't be in air conditioning for more than about five minutes, feels lovely during a hot flush but a no no for my hands😩.
I know what you mean about hot flashes! At this very moment, I have beads of sweat on my forehead and heat waving up my neck and down my back, but my fingers, toes and nose are freezing! Someone, please fix my thermostat!
It's horrible isn't it, there's no happy medium, it's just hot, cold, boiling or freezing, I wonder what it's like to be 'normal' I really can't remember...😩,!
I forgot to say that keeping my hands moisturised is really important too to try and prevent cracks in the skin which I tend to get in the winter , these cracks in the skin are very sore and very painful when the blood drains away from them 😩
Thanks Mifford it's always useful to know of good products. I shall check L' Occitanes out next time I need some, I've been using Neutrogena for sensitive skin. 👍🏼🌺
I have Secondary Raynaud's. Had the primary freezing hands and feet for years, just thought it was normal for me, until a junior doc remarked on how cold my hands were and assured me his were always cold but mine were really cold.
The hands in particular can be so bad I can't go into a shop with aircon or get something out of the fridge (thermal gloves on hand for the freezer). Over the last couple of years my nose is suffering a lot.
I have no tips at all, but am really looking forward to others. My worst problem is after a shower - I dry off and wrap up fast, but can get so chilled to the core I find it very hard warm up again. I have to psyche myself up to shower.
That's just like me . For years the medical establishment have asked me about my hands .now I know why ..
ive always had cold hands and feet always . Even in summer and doesn't take me long to feel cold my hands are usually a bluish purple colour .
Or white . I thought that was normal .
Or,I go to extremes ..... freezing or a sudden rush of heat. ...no balance .
Would it be a good,idea to mention it to my rheumy ?
I have facial rashes tifghtnswollenfingers and toes, swollen knees wrists all that sort,of excitement. Chest problems and just oh so very very tired , and feeling quite low with it all.
When hands go white with Raynauds it's not just pale skin if that's what you mean? It's like a whole finger will turn totally white because there's no blood flow to it, and it feels weird and numb - if this is what you get then it is likely to be Raynauds.
I don't think I can add a picture to a reply or I'd show you what I mean...
It's definitely worth mentioning it and getting it checked out 😀
I have a radiator but any plug in electical heater is a big no-no here, because the electricity supply + water = a big shock! I am thinking of plugging on a portable heater just inside my bedroom door so I can hobble that way, though.
Suffer badly with this in my hands and feet and have had severe chilblains on my toes in the winter since I was a teenager. Trying to think of hints and tips but for the freezer I wear gloves to take anything out but I can't handle veg etc that has just come out of the fridge or use cold water for cleaning these. For my feet I find my toes are much better if I wear some toe socks under my heat holder or thermal socks as this stops my toes rubbing together and becoming itchy and painful with chilblains. Bed socks help at night too. Sheepskin boots are good - wool in other things such as slippers or socks make me itch even more though so struggle with those. Hot Rox electric hand warmers are expensive but amazing. After the shower I dry myself with a hair dryer to warm up quickly. Uniqlo do heat generating thermals that are incredibly thin so great for layering - I often wear two of their tops under fleeces. Oh and stick the Hot Rox down your front! I've found if my chest is warm this seems to radiate heat round the rest of my body .. Works a bit like Vicks for a cold I guess 😊 I'll definitely be using the colour changing nail varnish as a fantastic idea to be on top of it before it starts!
I can't remember a time without Raynauds. I've tried most things including a week as an inpatient on Iloprost infusions which dropped my BP to 60/30 and caused me enough side effects to not want to try again. My greatest tips would be to keep your core (torso & arms) really warm, no gaps (tops that fit snugly right over your bum), shaggy pile fleece jumpers and my North Face polar fleece gloves
I was diagnosed with Raynauds. I don't experience pain but simply blanching then turning to purple. I find my hands ugly as a result and try to hide them when they are doing their 'thing'. It is secondary to lupus.
I have Raynauds Phenomenon and couldn't manage without taking Nifedipine daily. Also th insulate gloves and wool tights. Trick is to prevent attacks by wearing layers like others have said and finding a funky hat to keep 30 % of our body heat in!. X
This condition was mentioned during my visits to hospital for Lupus in 2005. I'd never heard of it.
I suffered "white fingers and toes" as a child and can remember my mother bathing my feet in warm water, she said I had a "poor circulation". It was never investigated as mum didnt like doctors very much, she made her own mind up. I dreaded the cold winter weather and winds. The wind used to make my head hurt and still does. Just this week as temps started to go down the whiteness showed in my fingers. I have sheepskin gloves (mittens) a present one xmas from a family member, and find those good. I have warm slippers, I buy Homeys and they keep my feet warm without socks. I would have the heating on in summer!! My daughters partner complained one day that walking in my house was like walking into a sauna. I was always feeling the cold but its improved a lot
It improved with the hydroxychloroquine pills the hospital prescribed back in 2005, I can manage Raynauds much better than I used to. Its taken a while I'm 70 in december this year
I may well try the hairdrier trick after a shower. My GP was about to prescribe something to help until he remembered my BP is very low. I'm still looking forward to others' tips
Hi Paul. Can you explain why I'm getting a lot of none English stuff coming up on my site interactions. Don't want them. Can you stop them. I no longer feel happy here. Thank you.
Hi Supul , what sort of interactions are these? Are they private messages or are they emails notifying you about new posts? It's possible that you have accidentally joined one of the other communities on HealthUnlocked which are based in another country.
Try going to your profile and clicking the 'edit profile' button. Half way down the page it will list the communities that you are a member of and allow you to leave any you do not wish to be a part of.
If that doesn't work, let me know and we can try something else.
Thank you Paul. I noticed that cat lady I think it was sent me a message and my reply starts with Yo..... also instead of reply box here and all others it says responde in green another says Enviar respuesta in green box and cancelar in white box.... I haven't got a clue!
Could be that you've accidentally changed the language settings on your HU account. This happened to me once and everything came in Afrikaans! Go to your settings and check is my advice.
1. Use an electric blanket at night to warm up your bed before climbing in.
2. Keep a heating pad under the sheets at your feet. Turn it on before you go to bed so the foot section is nice and warm. I cannot fall asleep if my feet are cold. I also wear socks to bed.
3. When going outside in the cold, warm your feet and hands first. Place them under warm running water until warm.
4. Put gloves/mittens and socks in the dryer before putting them on. I have found that putting socks and gloves on cold feet and hands only keeps Raynaud's feet and hands cold. They need a source of heat.
5. Mittens work better than gloves since the fingers of gloves tend to isolate fingers and keep them cold.
6. I point a blow dryer into my boots or shoes to warm them.
7. I take a low dose of amlodopine (blood pressure med) in the winter, which seems to help.
8. In the car, I use seat warmers. I put one hand between my leg and the seat while pointing the heat vent to the other hand on the steering wheel. Then switch back and forth.
9. When relaxing on the couch, I often sit cross-legged and tuck my toes into the inside of my knees to warm them. Difficult move but usually I can manage it.
10. I keep a small heater under my desk at work.
11. I have an automatic start on my car, so it can warm up before I get in.
12. When I was a teacher, I wore battery powered heated gloves for recess time outside and I had hot pads that warm up when the metal disk inside was clicked.
13. Keep throw blankets handy in every room of the house and wear house shoes.
As I explained in #4, blankets, socks, gloves, etc actually tend to insulate your hands and feet with cold if they start out cold much like a thermal glass will keep a cold drink, cold and hot one, hot. Some outside source or other body part must make them warm first. Then add coverings to keep the warmth in as long as possible.
They're really good tips shareasmile . I've found that 2 pairs of gloves creates too much pressure on poor circulation so gloves under large ski mitts is snug but cumbersome. Similarly, gloves with seams up the fingers will also cause things to shut down. My Rheumy is alwYs telling me to be fatter for the purpose of extra insulation . . .
As I read this, something else came to mind.....when my husband and I hold hands, I can't let him hold mine! I have to hold his. Otherwise, the squeezing, even lightly, cuts the flow. And we definitely cannot cross fingers!
I use the gloves designed for using iPhone/ iPad with ie little grey tips on forefinger and thumb. They aren't enough on their own in winter but otherwise they are like a second skin - especially in supermarkets all year round!
My old podiatrist gave me a large wadge of lambs' wool and showed me how to put a tuft in the toes of my socks so that they encase my toes like cosies. Brilliant - although I've run out now. My toes are much worse than my fingers for turning bright white.
This only started for me with RA symptoms five years ago. I was always really warm blooded until then but now it's a usually a circulatory nightmare! On my diagnoses list it always said Raynauds until recently it was changed to small fibre neuropathy (SFN). None the wiser about the difference though. Nifedipine gave me Erythromelalgia and severe foliciculitis.
My fingernails turn purple-grey during winter or when an office building is too cold for me ... hot coffe or cocoa is good at mornings, and eggnog at weekend nights LOL. A good laughter helps too.
I'm not saying alcohol/coffee is good for everyone but sometimes I just need something to make my blood flow
my best tip is wollen gloves and thick fleece socks but downside with raynards your feet sweat so please avoid the fur lined boots with th thick socks ..what I find is I carnt seem to stop the bottom of my feet from being sore tried everything ...now go to chiropodist once a month .i have to lupus and all the fun things that go with it make lupus a very expensive. Please where do you get the colour changing nail varnish ...ta
My family Dr looked at my hands & said I have Raynauds. Hands are cold & wrinkley from time the time. Rheumy asked if they turn a stark dominant white or blue. He said since they don't I don't have Raynauds.
Anyway when it acts up I do have gloves & socks in the house. Good idea to buy the heating pads. When I don't have these symptoms my hands fingers tend to be full or puffy.
Anyway it comes & goes so hopefully will go,for good. Just my info & have a good day.
Just to say thank you for the hairdryer trick post shower. It really helps.
I'm feeling the cold more and more, though. I shivered and turned blue when being examined at the GPs the other week, then had an emergency hysteroscopy at the hospital last week when I was "allowed" to keep my socks on but the nurse holding my hand couldn't believe how cold it was. Should have kept my gloves on, too!
I realize I might be a bit late to comment here. My fingers and toes are always cold but they do go the white colour. They become numb tingly and painful. Cold water washing veggies and fruit gets them all the time. I try and remember to use warm water. Cooler weather is hardest for me. At home I have electric throw blankets that I use all the time. Can get my whole body warm at once. Love it. As a special treat my husband bought me electric gloves. They are battery powered and I love them. Use them year round. If I catch them quick enough I can stop the cold in my hands. He bought them for me to wear on our motorcycle but I use them around the house much more. They are called Motion Heat and we bought online from an outlet in Calgary, Alberta, Canada. They are expensive at $250 but to me worth every penny.
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